Feeling so let down xx

Hi Guys ,though I read a lot of your posts its the first proper one I have wrote !! I am end stage copd and emplurisema diagnosed about 5 years ago ,we were spending most of our time in Turkey as we are both retired, came to England September 2015 I took ill and been here since , miss our trips but hey still here !! In just over 12 months I was in hospital five times ,pneaumonia and pleurisy I am also a CO2 retainer and have sleep apnea , I am on oxygen 15 hours a day and a bipap machine, On 27 th May 2016 I saw a specialist ( better not mention names ) that said after I had up to date tests he would refer me to Wythenshaw hospital to see if I would benefit from the valves they put in to help breathing I remember the date well as it was the worst day of my life ,my son died, I have had clinic appointments since and was told by various people " we will chase Withenshaw up " !! So on the 26 the of May this year still not heard anything and the last couple of months really struggling , not ill just so out of breath!! I thought bright I am going to phone Withinshaw, guess what ???? They hadn't even had a referal for me !!!! I was so upset I burst into tears !!!! Felt silly but couldn't help it, so the person I spoke to told me to try and get someone from my clinic to send my referrals , she was lovely gave me her fax number , so after phoning round the 3 Hospitals I am under I finally got someone to fax my federal through to wythenshaw, they phoned me back to say they had received everything , but I am so angry and upset over it surely these things shouldn't happen?? The girl at Wythenshaw said to me what a shame you hadn't phoned six month earlier !!! I could have been sorted by now !!! Anybody else had any bad experiences ??? Thanx for reading xx bless you all xxxx

10 Replies

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  • Just noticed all my mistakes !!!! Sorry !!! Not sure if I need a new iPad or a new finger !!!! Haha

  • You can amend it by clicking on the little downward arrow and click edit. Amend then click edit reponse and your post will reappear minus the spelling mistakes.

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    Well done for your efforts as this must be very hard when you are so ill. At least you have got it sorted now and hopefully the valves will be suitable for you and help.

  • No problem, no one here checks for spelling or grammar, if they did I think we would all be in trouble from time to time.

  • Oh yes a few but not a specialist hospital ,I waited months for a ENT appointment only to then be told I wasn't on the list so had to wait months again also 2xscans I was waiting for both apointments had got lost x

  • That is terrible. I recently had a similar problem where the referral was not done, but not for anything nearly as serious as yours. It is sad but it seems a person has to follow-up on everything and you can't just assume they did what they said they were going to do.

    I certainly feel for you but now that the referral has actually gone through hopefully they will get you in soon enough.

    Good luck

  • How awful for you , caz2408 . At least you did follow it up and now something is going to happen. Hope it all goes a lot better for you now.

  • Hello caz2408 .

    I am appalled that the specialist was so negligent. It is really inexcusable and very negligent. Have you considered reporting the matter? How can a year lapse and they still hadn't done anything? And what was their pitiful excuse?

    I am so sorry that you lost your son. What a dreadful time this has been for you. You have my deepest sympathy.

    I do hope Wythenshaw will look into your case with the utmost urgency. Please do keep us updated. I am anxious to hear how things go for you.

    Take care.

    Cas xx 🌹

  • Sometimes we slip through cracks NHS System I have been on Heart Meds for ever it seems my Colitis Specialist spent my entire check up looking at my meds slip said I am taking an awful lot & Heart tabs highly dangerous at my age! Had appointment with doc re B/P asked he said had to wait to hear from my Colitis Specialist first! Went down to Chemist after I left him for a Script new Pharmacist very concerned about Heart tabs & having to take 320mg B/P tabs a day, could he contact surgery would I write a letter I could have kisse him? Typed a full page had few days later letter can I phone surgery for appointment? Receptionist (the nice one!) said to see ? went in he was so pleasant shook my hand apologised for making me wait as he read my letter first! He was going to make an urgent appointment Cardiologist my Heart is affecting my B/P & vice versa! He was first doc I have seen in years who took notice 3 weeks tom no appointment but my hospital 8 miles in Haverfordwest away no Cardiologist he is in Llanelli which is 54 miles away! Sometimes it feels as if we are banging our heads against a brick wall & we are suffereing so badly it should be classed a crime! Chest Clinic Nurse said i need a Nebuliser & Sputum tests to get right antibiotics docs refused so gave letter to explaining thisto her! Have 2 shadows on 1 lung so have CT Scan it goes on. Hope you are sorted soon God Bless

  • Hello Caz2408, sorry about the sad news of your sons death, it is not long and obviouly you have been really ill since. No wonder you feel angry at the Consultant who has let you down at a very traumatic time. I would ask Pals to note your displeasure at this failing, but that no doubt would cause you more stress, when you least need it. Sadly these things do happen and sometimes quite frequently. Fingers do stray a little when we have emotional issues at hand, do not worry about it we all make typing errors. It is a good job you contacted Wythenshaw or this error would have gone unnoticed. Glad to hear they were very helpful.Tears are often the only release we have when things go wrong , do not feel silly it was a natural reaction in the circumstances, but others don't realise why it was so upsetting for you. Hope it all gets sorted for you now , look after yourself , take care and stay as well as you can. xx

  • Hi I'm end stage and a carbon dioxide retainer. Oxygen 24/7 and bipap machine 18hrs a day. Wythenshawe is the hospital I'm now under and they saved my life. I was in hospital every week with the retaining and was slowly giving up I was so I'll. So hopefully now you have got your referral things will get done for you. Good luck with it all.

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